The nationally codesigned Rare Disease Disability Toolkit (the Toolkit):
- Includes new peer-to-peer supports.
- Builds capacity in disability rights and self-advocacy.
- Supports people to better access and navigate disability and other systems (such as health, education and employment).
Rare Voices Australia (RVA) continues to promote the first round of Toolkit resources released in March 2026, which include:
- National Disability Insurance Scheme (NDIS) and Rare Disease Disability – Part 1: Accessibility and Eligibility
- Reasonable Adjustments in Healthcare: What Can I Ask For?
- Navigating Air Travel with Rare Disease Disability
‘Navigating Air Travel with Rare Disease Disability’ and the Upcoming Australian Air Passenger Travel Guide
The Australian Government is implementing reforms to better protect the rights of airline and airport consumers. This includes the new Aviation Consumer Ombuds Scheme (the Scheme), an independent service to help consumers resolve complaints about airlines and airports, that sits within the Department of Infrastructure, Transport, Regional Development, Communications, Sport and the Arts.
The Interim Aviation Ombudsperson is developing an Australian Air Passenger Travel Guide. They have contacted RVA to seek permission to incorporate and draw on the Navigating Air Travel with Rare Disease Disability Toolkit resource for a chapter on accessibility. The intention is for the Australian Air Passenger Travel Guide to be translated into several languages.
This is wonderful recognition for this quality resource and is testament to the people living with rare disease disability who helped RVA to codesign these resources, including the Rare Disease Disability Project Stakeholder Reference Group and Rare Disease Disability Network members.
The Toolkit resource was shaped by RVA’s participation in the Aviation Disability Standards co-design workshops in 2026. We extend our appreciation to the co-chairs of the Aviation Accessibility Steering Committee from the Australian Federation of Disability Organisations (AFDO) and People with Disability Australia (PWDA) for their work in this space.
About the Rare Disease Disability Toolkit
The Toolkit was codesigned with people living with rare disease disability and facilitated by RVA. The Toolkit was funded by the Australian Government through the Peer Support and Capacity Building grant for the NDIS as part of the Rare Disease Disability Project.
